Not Dx'ed yet; Traveling Abroad
 

Hi there,

I recently finished treatment for lymphoma, and we're on a trip through Europe to celebrate. For the last 5 days or so I've noticed some symptoms in myself that sound MGish:

- left eyelid drooping
- left eye wandering, causing double-vision
- trouble swallowing
- speech oddities (excessively nasal sometimes)
- limb weakness, especially in my right tricep

We've got a little under a week until we get home. Should I be trying to go to an ER abroad ASAP or I'd the wait OK?

tommusic, you are NOT going to like what I have to say. ER docs do not usually know much, if anything, about MG. MG is not a disorder that is easily diagnosed OR treated. You don't just get a pill or shot and then go merrily on your way.

I shudder to think what "might" happen to you if you DO have MG and you start having problems AND need medical care in a strange city.

I am NOT a doctor -- we do have a doctor who is a member -- she is NOT a neuro -- but, she has MG herself. Maybe she will see your post and give advice, too.

My advice -- and, please note that this is ADVICE -- OPINION. Do NOT PUSH yourself -- get enough rest every night -- eat wisely and at regular intervals -- stay hydrated -- do not get too hot or too cold -- stay AWAY from sick people (use antibacterial wipes/sanitizer if possible) -- and try not to get stressed or upset about anything. IF you DO have MG, then this "might" keep you from going "over the edge" until you can get home and get an appointment with a neurologist.

BTW, I would have said that this ALSO sounded like a one-sided stroke (left side) -- but, then you threw in your right arm weakness.

If you think that this MIGHT still be a stroke -- or aneurysm -- or something else -- DO, by ALL means, GO to an ER.

These symptoms are NOT "locked in" to MG.

Thanks Jana!

This trip has been a stressful one; I had some really bad ear pain that was dx'ed as being from congestion, and that kept my from getting much sleep at all for a period of four days. If MG is it, the stress probably got it revved up.

I'm glad to see you confirm that an ER doc is not going to be the best to diagnose this. I just feel antsy and want to get started fixing me again.

I've written to my oncologist back home to let him know what's going on, and to get a recommendation for a neurologist at the dame hosptial. I'll be heading into Urgent Care to get the process started as soon as our flight arrives.

We beat cancer. I'm supposed to be healthy now. Gotta work this out!

Sounds like you are in good hands with a doc who cares.

This is an awesome group of people -- they will be able to answer just about any question you have -- even before you are diagnosed. Keep us posted.

Try to enjoy the rest of your trip. Best wishes!!

Hi Tom...welcome to group!

A couple of other suggestions. There are some things that can make MG worse that it wouldn't hurt to avoid until you get to your doc.

No alcohol, muscle relaxers, and check out whatever meds (prescribed or over the counter) that you are taking for the ear infection/congestion since some meds are contraindicated with MG. I will try to find the link for this and post later unless someone beats me to it!!

Also, try applying ice to your eye for a few minutes to see if the drooping improves. This is a 'cheap test' for the liklihood of MG. (With MG, muscle tone can improve for a bit after icing.)

Keep us posted - - and hope all stays static until you get home. And CONGRATS on beating your lymphoma!!

Sue

Hey Tom,

Welcome to the group! What a great doctor you have and that's wonderful you beat the cancer. Hang in there and let know how you make out.;)

Hugs,
Pat

hope you don't have MG, and those are just some late side effects of chemo, that will gradually improve. I have seen that, albeit quite uncommon, afer treatment for lymphoma.

either way, it is a good idea to rest as much as possible for now, and figure it all out when you are back, unless you are experiencing significant breathing or swallowing difficulties, in which case you should probably go to an ER.

alice

I completely agree, you need to go to the ER. Whenever you have symptoms like this, they are SERIOUS. You can't tell if you've had a stroke or something else. We certainly can't tell either.

It's possible, since you had lymphoma, that the cancer could be in your thymus gland, causing a thymoma. Some people with a thymoma can have symptoms of MG. When the thymoma is removed, the MG can go away.

Again, go to the ER. I wouldn't even hesitate. And I've been on a plane to go overseas with MG. Not fun at all - and I KNEW what was wrong with me and was stable. What's more important? A trip or being alive?

I hope you get the care you need.

Annie

Hi Tom,

welcome, I hope its not MG, and it looks like everyone has done an admiral job filling you in and giving you great advice!!!!, which is good cos my fingers don't feel like typing.
I hope things start improving for you and you can enjoy the rest of your holiday
take care
Kate